by Gillian Chowns, Karilyn Collins, George Smerdon and Ruth Wooldridge.
The need for effective palliative care in Africa and other resource-poor countries has been well documented (Wright and Clark 2006, Grant et al 2011) in the last decade or so, and significant attempts have been made to establish services in both hospitals and in the community. A fundamental need is for appropriate training in order to ensure a supply of skilled personnel to sustain both embryonic and established services. Such training ranges from basic short introductory courses for community volunteers, through extended workshops, to multi-professional diploma and degree level studies. However, completion of a course of training is no guarantee of successful, sustained application in the field and this has led to a search for more effective approaches to applying, embedding and sustaining the learning gained in formal education. One such approach has been to follow up a training course with a period of face-to-face mentoring on-site, with the aim of supporting newly trained staff, providing advocacy where appropriate, and raising the profile of the palliative care service. This article offers a critical reflection of the experience of trainers and mentors from Palliative Care Works (PCW), a not-for-profit organisation, in delivering training and mentoring in a range of settings and countries in Africa. It examines the assumptions and aspirations of this model, and highlights the serious challenges facing palliative care delivery in much of Africa.
Founded in 2008 and working primarily, though not exclusively, in Africa, PCW began delivering week-long workshops in palliative care in 2009. It has a multi-professional team, which includes nurses, social workers, and doctors, who bring a broad range of expertise in both adult and paediatric services, education, research and advocacy. It has worked with the Diana Princess of Wales Memorial Fund, Tearfund, AfrOx, and the University of Edinburgh.
Much of its training has been based upon the Palliative Care Toolkit (Lavy V, Bond C and Wooldridge R, 2004) and its companion Trainer’s Manual (Lavy V, 2004), both of which have been written for a wide, as opposed to specialist, readership, and which are designed to be practical, hands-on, accessible manuals with a direct, ‘can-do’ approach.
While the immediate feedback from the multi-professional workshops facilitated by PCW has been gratifyingly and uniformly positive, it has become evident that participants have nevertheless struggled to maintain the learning, sustain their enthusiasm and apply the training in their daily work – a well-documented problem that is certainly not specific to Africa alone (Wee B and Hughes N 2007).
Bridging the gap between a stand-alone training course and day-to-day practice faces the same daunting obstacles in both developed and resource-poor countries – crowded days, lack of peer or managerial support, self-doubt, time pressures, limited resources, and the fear of risk-taking. An example from the African context demonstrates this: despite a week of Toolkit training, and having morphine readily available and many patients in need of it, the team from one district hospital in Tanzania did not prescribe morphine for two years. Only when a mentor from the UK came and worked with them did they begin to use morphine regularly.
In an effort to tackle this problem, one of the authors of the Trainer’s Manual, Dr Karilyn Collins, suggested a move to the ‘training plus mentoring’ model referred to above. While there is not space here for a detailed consideration of the challenges involved in the recruitment and funding of appropriate individuals to provide mentoring, the purpose of this paper is to offer some considered reflections on the experience of combining training courses with follow-up, on-site mentoring from an experienced palliative care professional, to identify the responsibilities of those involved, and to assess the effectiveness of this approach.
In Tanga region in Tanzania, where, after a week’s training in palliative care, teams were established in the regional hospital and all the district hospitals, mentors were recruited to work with these teams for 3-6 months. The following is a verbatim testimony from Henry Kwingwa, a doctor in one of these district hospitals:
“I remember when we were at medical school we were taught that morphine is dangerous and should only be prescribed by a senior person. As clinical officers we therefore avoided the use of morphine. When we learned about morphine in our palliative care training it was still very hard for me to use it. My mentor came to help with palliative care and I thought ‘let me watch and see what happens when morphine is used’. I saw several patients benefit. One child, who had thirty five per cent burns, used to scream all the time. The nurses even avoided doing the dressing as she serenaded so much and I felt almost numb to her suffering. Morphine was given to her and worked wonders. The child’s grandmother came to us and said ‘this is a wonderful drug.’ That young child recovered and went home. Cases like this made me realise that my worries about morphine has been incorrect and I started to use it in my practice. Still my colleagues have a lot of fears about morphine although they will send patients to me. They say ‘I am afraid that morphine is an addictive drug but Kwingwa can use it as he is a specialist’. I have changed but there is still much to be done.”
Following the success of the Tanga project, PCW worked with Tearfund to establish palliative care in 3 areas around Lake Victoria using the same model of training followed up by mentoring.
Geita is a mining town in the Lake Region and the early success of the PC team there stemmed from the PC co-ordinator (who was being mentored) also being the HBC (Home Based Care) co-ordinator. The two nurses on the PC team also had strong links in the community and whilst HBC consolidated its role in PC, sensitising the medical staff in the Govt Hospital was quite a challenge. How to address this led to a number of options being considered. What concerned the mentee most was how little oral morphine was being used so she decided that a presentation be given to the medical staff on the use of morphine. The mentor was asked to help the mentee and her nurse colleagues to produce this presentation – and he soon realised this was shorthand for ‘we don’t know what to do. Help us’! ‘It’s all in the TOOLKIT’ was the only guidance he gave, and they rose to the challenge brilliantly. Over the course of two hours the three team members put together an impressive presentation which went off extremely successfully. Not only did it fully inform the medical staff but, and almost more importantly, it gave the nurses the confidence and a sense of empowerment to take up other challenges in connection with implementing PC. And proved again, how valuable the Toolkit was!
Mentoring in both these projects sometimes extended beyond the initial commitment. The mentors at the Regional hospital in Tanga returned from Canada for a month each year and set up a charity to support their work, and another Tanga mentor funded a part time nurse to continue working after her retirement. Meanwhile, two of the mentors in the Tearfund project kept up their links beyond the initial prescribed three months, one in establishing a charity to support a children’s home and the other helping to set up agricultural projects to provide incentives for volunteers. These illustrate the potential for personal as well as professional relationships to develop as a result of mentorship attachments and are examples of mentorship extending far beyond the initial intention and being life changing experiences for the mentors involved.
Under the THET project to strengthen palliative care in four African countries, mentors supported teams in Uganda, Rwanda, Kenya and Zambia. The following stories illustrate the power of mentorshipto change practice and build the confidencethat cannot be taught in a classroom setting.
At the bedside of a seriously ill little girl, the focus was almost exclusively on the physical issues, and no-one addressed the child directly. One of the mentors started a conversation with the child and then the mother, and in the later review of the ward round, the mentors sought to gain a better understanding of the psychosocial factors relating to this patient and others on the ward. A few days later when one of the doctors was planning a presentation to the hospital staff, the other mentor reminded him of these factors, and the doctor’s resulting presentation gave a much more holistic view of this family and provoked a rich discussion among the staff. Thus, the mentors’ modelling of a more holistic approach enabled the doctor to model this to his peers, made for a more worthwhile training session, and may just have prompted other staff to adapt their approach on the wards.
In November 2013 a doctor and nurse team, both with palliative care experience, were asked to spend two weeks mentoring in a district hospital in eastern Rwanda. Here they describe the situation they met.
“A multi disciplinary team of 20 hospital staff had received a five day Toolkit training course in December 2012, some eleven months prior to our visit. Thereafter, support to assist staff to implement what they had learnt during the course had been limited.
A core team of five, a mental health nurse, a social worker and three doctors had tried to implement a palliative care service within the hospital but felt insecure with such minimum training. They were aware too of the need to extend the work into the community; the social worker was doing a few home visits.
This team were prepared for our visit with a daily timetable that also included home visits.
Mornings were mostly allocated to ward rounds which became opportunities for us to encourage the team to use the knowledge they had learnt on the course. Many patients referred were more suitable for rehabilitation rather than palliative care, some were receiving active medical treatment although they were in the terminal stage of their illness, and others needed psychosocial support and information in order for them to be able to make decisions and plan for their future.
During afternoons the team and others who had attended the initial Toolkit course came asking for help in areas they felt least confident in – How to break bad news, pain assessment and pain relief and giving psychosocial support. The team asked us for ideas in taking the service forward and working together we came up with a plan that included creating the role of a palliative care champion in the hospital who would be the focal point for all referrals. How to share their information with the other members of staff, and the need to look at training in the community were also key issues. “
As the above illustrates, mentoring requires a flexible approach. After the eleven month gap between initial training and implementation a certain amount of refreshing on what had been learned on the TK course and putting it into practice was essential.
The following story from Rwanda illustrates the way that mentorship can facilitate the sharing of good practice.
As part of the mentorship programme, the two mentors organised workshop sessions in the afternoon. At one of these sessions they had a mixture of doctors, nurses, social workers and other health professionals and the participants were describing cases they were finding difficult on the ward. One of the young intern doctors listened intently whilst a nurse described a case of a fungating wound that smelt so bad that even the relatives could not sit with the patient. She went on to describe how they had learned on the palliative care course to crush metronidazole and sprinkle it on the wound. She described vividly the joy of the relatives and the patient when they became socially acceptable again. The young intern was very impressed and said “Today I have learned something from the nurse here that I never knew ”. Mentorship gave this nurse the facility and the confidence to share knowledge with a doctor in a culture where generally nurses would not suggest management of patients to doctors.
Another story from Rwanda illustrates the value of mentorship after training.
Good training is essential but it is only effective as far as the participant understands what has been taught. The mentors in Rwanda came across misconceptions relating to basic pain management that had grown through misunderstanding of the WHO pain ladder. One young lad with osteosarcoma of the thigh was in considerable pain and the team were desperate to know how to help him. There was no morphine available and he was on the top dose of tramadol. Currently his pain was 5/5. The mentors stood by his bed and suggested adding paracetamol and diclofenac into his treatment schedule. The staff were very hesitant; “How can paracetamol help when he has tramadol? Can he take them all together? “ The next day the pain was 2/5,and thus the myth about not continuing step one drugs onto steps two and three had been corrected and good practice in pain management demonstrated. Some time later, the mentors suggested that this lad might like to return home, as his pain was now better controlled and otherwise he was destined to spend the rest of his life in a hospital ward waiting to die. However, the mentors’ lack of understanding of the social and psychological aspects of this case and their inability to communicate directly with the patient meant that they had jumped to conclusions that were incorrect. The next morning the pain had returned to 5/5 with no reduction in his drugs, and there was gloom and despondency all round. For the mentors, this was an ideal example to demonstrate the holistic aspects to pain. They encouraged the social worker to talk to the boy and gradually the pain responded over the next 2 days without changes in the treatment regime.
This case was an excellent example of the power of bedside mentoring, and taking a holistic approach in communicating with patients.
Further mentoring experiences were gained in Zambia as part of the THET programme, supporting recently trained multi-professional teams at two hospitals – Ndola Central Hospital, in the Copperbelt, and Mazabuka, in Southern Province.
The Palliative Care lead at Ndola Central Hospital, an 800 bedded teaching hospital, was a skilled and experienced palliative care doctor. He asked for the mentors to work with the recently trained Nurses in Charge to help them gain confidence in applying theory to practice.
The first example involved Proserpina, an experienced ‘in charge’ nurse, who had no problem understanding mentorship as she was mentoring a member of the hospital management team as part of a leadership programme. One afternoon she wanted to take the mentor to see a 55 year old man who had been diagnosed with CA penis six weeks earlier, followed a fortnight later by an amputation. Proserpina nurse gave the history and said ‘Please ask any question’. The account does not do justice to the high emotion of the conversation which soon became three way as the mentor was drawn into it and they all talked about how he was told he had cancer. Apparently, the Dr came out with it very bluntly and said ‘This is what you’ve got, this is what we’re going to do and you will be cured’. Job done! Mentee and mentor together discussed his progress but essentially Proserpina wanted to explore his pain. She had got to know him well over the past six weeks and could see that when she was assessing his pain he was ‘being a man’ and did not want to admit to being in pain. He had agreed take some analgesia which was then Tramadol 25mg, 8 hourly. She realised that his pain was more complex and wanted to see if she could get him to share what she described as ‘the pain in his heart’. As he became more confident, he was able to talk about not being a good husband anymore and he spoke in general terms about ‘not functioning’ and his deep sense of loss and failure. He was most concerned that his wife would leave him for another man who was able to ‘function normally’. She (his wife) did not want to talk about ‘it’ until he came home. There followed a long and intimate conversation which brilliantly demonstrated what a very caring, skilful and intuitive nurse Proserpina was – one with outstanding communications skills. Later, when the mentor reviewed the consultation – which had clearly gone well – she amazed him by saying, ‘I have never talked like this with a patient before’ and ‘I feel so good that what I suspected is true. Having you there gave me the confidence to ask him all those things and talk as we did.’
One of the doctors who had recently undergone PC training asked her mentor to see one of her patients. This was a sixteen year old boy who had been left very severely brain damaged after cerebral malaria, contracted aged four. He had been brought in by his parents the day before because he had become progressively weaker over the last four weeks and had stopped feeding. This was associated with an acute, diarrhoeal illness. He could not communicate in any meaningful way, had severe contractures of all four limbs and had noticeable bed sores. He was emaciated but did not appear to be toxic or acutely ill. ‘So what do you think is going on here?’ the mentor asked. The doctor, looking puzzled, replied, ‘I want you to tell me how you would manage him, what you would do, so I can learn from you. PC patients are so complicated. The theory is one thing but applying it is another matter. Where do you find the time?’ The two of them then went on to have a wonderful discussion about what she thought was going on in that situation, with the mentor encouraging her to think aloud specifically in holistic terms, looking at all the issues as she saw them. She seemed reluctant to be honest with herself especially about the reality that there was a patient who was coming to the end of his life. Discussing a patient like this was clearly a new experience for her but she responded brilliantly and felt that this exploration of the situation had begun to give her the confidence she felt she needed to bring good palliative care into her everyday practice.
It is clear from the partnerships experienced over the last few years that effective mentoring was valued by the mentees, for five key reasons.
It validated, nurtured and enhanced both knowledge and skills, so that the mentee developed as both person and practitioner. She or he became not only more professionally competent, but also more personally compassionate.
The balance of support and challenge inherent in skilled mentoring encouraged a mentee to become a reflective practitioner, constantly aware and analytical, and able to go beyond the concern to do the thing right ( in terms of performing procedure correctly) to doing the right thing ( working holistically to do what is both ethical and effective).
Thirdly, mentorship brought credibility. The investment of time and expertise by a mentor from outside the organisation and often outside the country concerned, was a powerful symbol and an important endorsement of the work of the mentee. This was sometimes be uncomfortable for the mentor who may have had anxieties about the ascription of expertise and status that she considered undeserved, but the fact that someone had chosen to come and spend time to support the work in a less well-resourced setting was invariably deeply appreciated by more than just the mentee.
Closely linked to credibility was advocacy. Mentoring offered both mentor and mentee the opportunity to advocate for palliative care – judiciously and appropriately. Advocacy from the mentor may, perhaps sadly, have carried more weight than that from the mentee, but if it prompted the host to give greater priority to palliative care, then many would argue that that is what mattered.
Finally, and crucially, it gave the mentee confidence. It is hard to both quantify and also to emphasise sufficiently this elusive quality of confidence – but it was confidence that enabled mentees to put into practice the knowledge they gained from training courses, and to argue, often in the face of opposition or indifference of peers and superiors, for palliative care. And those are surely the abilities that will contribute to effective, sustainable services – the goal of all who work in palliative care.
The stories above illustrate just how useful a contribution mentors can make, often over a very short time period. But effective mentoring is a skilled task and does not ‘just happen’. Preparation is everything, and while every mentoring situation is unique, some clear principles have emerged from the experiences of mentors in different countries and settings.
As a result, the mentors from the Tanga, Tearfund Lake Zone and the THET programme came together over one weekend to pool their experiences and produce a short guide for all three parties – the sponsoring organisation, the host organisation, and the mentor – who share the responsibility for making the experience worthwhile for all involved.
The sponsor, in partnership with the host, needs to define clear goals and identify the tasks involved. Although mentoring is a dynamic process and the situation on the ground will almost certainly change, it is essential to offer as much clarity as possible to begin with, and to be clear not only about what tasks are included in mentoring, but also which ones are not part of the mentor’s brief. Timing of the visit is a key issue here; the sender needs to ensure that the host can be sufficiently available to, and for, the mentor during the visit.
In tandem with this, it needs to explore with the mentor what her or his expectations or assumptions are. Investment in this process will save time, trouble and tears later on!
Preparation of mentors is vital and the responsibility for this rests primarily with the sponsor; as a minimum, guidance on cultural and political issues is essential, and some basic language training is more than desirable. Equally, attention to practical issues – visas, professional certification, health requirements, safety concerns, expenses/salary, and accommodation – is a key responsibility of the sending organisation, not only before the mentor arrives, but also during their stay. A dedicated contact name should always be given to the mentor.
Finally, there is a duty of care when the mentor returns. A debrief is essential; it values the mentor’s contribution, enables shared learning between host and sender and offers space to address any concerns or needs that the mentor may have. Where appropriate, contact with fellow mentors can be facilitated.
Again, the prime task, prior to the visit, is to define expectations, in negotiation with the sending organisation, and any other relevant parties, such as national associations. Once this is done it is equally vital to communicate these to the rest of the team, and to senior members of the hospital, hospice or community service, so that the role of mentor is clearly understood. Missing out this step is a recipe for confusion and dissatisfaction on all sides. Once the mentor has arrived on site it is wise to revisit these expectations and to jointly identify some specific goals and tasks.
Time – of which there is never enough in palliative care – is often problematic. The team or individual(s) being mentored will have other heavy demands on their time, but unless substantial time has been set aside for working with the mentor, the visit will be less than effective. This is especially important when the mentor’s visit is short, for example two weeks rather than several months. At the bare minimum, they need to be ready and waiting when the mentor arrives; a team meeting on the first day is a crucial opportunity to begin making relationships, developing a shared understanding and agreeing a reasonably detailed timetable or workplan. This meeting should also identify – and celebrate! – what has already been achieved, as well as possible problems, such as implementing a service, or irregular or non-existent morphine supply. An introduction to key personnel in the organisation’s hierarchy is also best done on the first day, but a printed organisation chart and some written information for the mentor to have to hand during their stay is a real kindness; only the superhuman can remember and comprehend all that they experience on their first day in a strange setting!
On a practical level, the host organisation needs to ensure that safe and suitable accommodation is ready for the mentor(s). It is best practice to provide a named link person, whose duties are threefold; to tactfully inform the mentor of any potentially unacceptable or inappropriate practices or behaviours, in keeping with local cultural norms and beliefs: to provide the mentor(s) with information about basic services, local conditions, infrastructure, travel, etc: and to be the first port of call in the event of any problems.
While some mentors may be relatively experienced or have lived in the host country previously, the recommendations below apply equally well to them as to those completely new to the experience.
All mentors need to undertake a substantial amount of ‘homework’ before they leave the UK. It is essential that they are clear about necessary documentation and registration, and be aware of legalities concerning visas and possible accreditation requirements back in the UK. They may need to supplement the information the sending organisation provides and conduct some basic research on the area to which they are being sent, the health and social care structures of the country, and the historical background. If they have not been given any information about the team or individuals with whom they will be working – such as training in palliative care, professional background, availability to the mentor – they need to ask for it! The same applies to accommodation; mentors should not be afraid to ask what facilities it has (running water/hot water, means of cooking etc etc).
Learning some basic phrases will pay handsome dividends; greetings, please and thank you, and some numbers should not prove too tricky, and are usually immensely appreciated by the mentees. Particular care should be taken to learn the names of colleagues and to write and pronounce them correctly.
In terms of the work of mentoring, familiarisation with the Palliative Care Toolkit and its companion Trainer’s Manual may be extremely useful; it is good to explore web resources while in the UK but they may well not be accessible on site, so it is wise to find space in the suitcase for English and local vernacular versions of the TK and TM.
Mentors also need to give some thought to their return to the UK; in conjunction with the sending organisation they need to establish the limits or extent of any ongoing involvement with the host organization, such as developing links with a local hospice or hospital, before returning home, and preferably before leaving the UK. Long term involvement can be a very valuable experience, but all parties need to be clear as to what may be expected.
It is a truism that first impressions are crucial, and this applies not just to the initial face to face meeting, but also to the email, phone or Skype communications that should be established prior to arrival. While a Skype call is ideal, carefully phrased emails can also establish a sound foundation for the mentor’s visit.
On arrival in the host country, the mentor may wish to invest in a dongle and sim card (for an unlocked mobile), – or whatever is now the latest technology -so as to facilitate practical planning and communication, and contact with home.
As indicated in the preceding sections, there is much to do on the first day, but while the mentor needs to travel with flexible expectations and cultural sensitivity, it is also important to make realistic and achievable plans with the hosts as soon as possible: managing everyone’s expectations is a demanding task, and delay in negotiating a realistic plan will only make the task impossible! Introductions to senior staff should be the host’s responsibility, but it this does not happen, the mentor may need to be proactive and politely ask for a meeting, while bearing in mind that senior staff may not necessarily be the key players; mentors will need to assess the situation and take opportunities as they come.
Mentoring can richly rewarding but is rarely straightforward, and mentors should adapt the pace of their activity according to the length of their stay. In general, it is good advice to take things gently. In particular, it is important to acknowledge successes, however small, and avoid criticizing the host organization or individual mentees. This does not, however, mean that mentors should not be prepared to challenge, if necessary. Clearly, this is not an easy tightrope to walk; it is essential to have realistic personal expectations and to be prepared to work on other people’s terms to a large extent, but it is equally important that mentors are true to themselves and have the courage to offer alternative views and approaches to the palliative care task. They bring considerable skills and experience to challenging settings in resource-poor countries, so need to value their own contribution, while still being humble enough to recognise that they do not know everything – or even, in some aspects, very much!
Few mentors will find this balancing act easy, so it is hard to overemphasise the importance of sharing the inevitable problems and anxieties with fellow mentors, colleagues or family back home. The named contact in the sending organization should also be a resource for the mentor.
Sharing is also an issue in terms of follow-up and feedback.All three parties need to agree expectations in terms of report writing and the manner of mentor and mentee feed back? This aspect of partnership is another generic principle of effective mentorship and should be seen very much as a joint exercise between mentors and mentees, embodying as it does, ongoing work and action plans etc. Understanding and committing to this is a shared responsibility across all groups; Host, Sender and Mentor. A clear agreement as to the nature and frequency of reports and email contact between the three parties is crucial; experience shows that once the mentor has left, good intentions are hard to convert to concrete actions and vague protestations of keeping in contact will certainly wilt under the pressures of work.
Finally, most mentors are highly motivated and committed individuals keen to maximise their input; nevertheless, they should take some time out from the mentoring, perhaps by spending the weekends away from site, enjoying the host country’s sights and hospitality.Not only will this help to keep the frustrations and challenges of mentoring in proportion, but it also provides a good role model of work/life balance for the host team. Caring for oneself is an acknowledged part of good palliative care – but, though widely preached it is more rarely practised!
Sadly, however thoroughly the three parties to the arrangement have prepared themselves and their partners, there is much else that can militate against effective mentoring, and which is often beyond the partners’ powers to influence. For example, in many of the countries where the mentors are working, Governments have agreed a policy on integrating palliative care into the health care system. However, implementation of these agreed policies is often being delayed, for one reason or another. Despite increasing international pressure from WHO, the reality is that palliative care is not seen as a priority. Whilst it is clearly needed, channelling limited health care resources into prevention programmes such as cervical screening and male circumcision seems to suggest that palliative care is slipping down the list of priorities. This is hugely frustrating for the palliative care teams and greatly adds to the challenges they face. This is particularly relevant as, in almost all of the hospitals in which mentors worked, the palliative care team is not given protected time to develop and deliver palliative care. It is not yet recognised as an integral part of patient care, despite continuing HIV/AIDS and related illness as well as widespread serious and progressive non communicable disease. Palliative care is, however, appearing in medical school and nursing school curricula. Unfortunately, it is still thought to be about pain relief using morphine and not about symptom control, let alone psychosocial care. Referral criteria, where they are in place, are often unclear, and tend to focus only HIV/AIDS and related conditions. Patients with non communicable disease are referred late or not at all. Patients in need of palliative care are being missed and referral rates remain low. These rates need to rise, not only because of the huge unmet need but also because, by demonstrating increasing need for palliative care and associated activity through efficient data collection, services could put pressure on DMOs to include palliative care in their budgets. Clinicians, of course, want to cure their patients and will often strive to do so even when it is clear that the patient is terminally ill. There can be collusion as patients and relatives can drive this too. Conversely, patients will be told there is nothing that can be done and sent home with no referral to the palliative care team, or indeed to Home Based Care, even where it exists. Patients are lost to follow up because of unclear referral pathways between hospital and community . Community care is key but HBC can be very patchy and there is a limit to what village health care workers can do. Doctors are reluctant to go into the community to visit patients unless they are paid extra to do so. Even where there is HBC, such is widespread poverty, that palliative care patients will say, “What is the point of bringing me drugs when I need food ”. Social welfare is fragmented and mostly inadequate depending, as it does, on a very limited budget from District Councils for “those in serious need ”. Expectations of the Social Worker in a palliative care team to “do something “ are huge. This money inevitably runs out very quickly and Faith Based Organisations (FBOs), who have traditionally led on HBC, are increasingly stretched. As NGOs, which have been supporting health care initiatives, begin to withdraw, a yawning gap is opening up in care in the community.
While implementation is a major issue, there are several other significant barriers that militate against effective palliative care.
As indicated above, palliative care cannot be practised in the isolation of hospital or community but must have communication and referral pathways from each to the other. Both continuity of care of patients from diagnosis to death and bereavement care for their relatives are essential for quality Palliative care. Some programmes have been first established at hospital level, leaving gaps of care when patients return home and similarly programmes started with training at grass roots level can leave a gap when more technical help is needed and opiates need prescribing. The lack of community medicine in parts of the developing world makes this a major challenge. Limited knowledge and education and lack of status of most home care workers may make it hard for them to form relationships with trained hospital staff and this is perhaps one place where mentors from another culture can sensitively make a difference. What is possible to achieve within a specified mentorship will depend on the original expectations of the programme and the sending organisation.
Nevertheless, without hospital and community services working in tandem, good palliative care will be difficult to deliver effectively.
Most health care workers in developing countries have to multi-task, due to staff shortages and multiple trainings. It is important to see the principles and practice of good palliative care as part of everyone’s daily work, in order for it to be integrated into the broader health care system, but the addition of salary incentives to some staff for delivering such care is likely to cause problems from the start.
A significant problem is staff transfers; the nurse with a passion for palliative care, some training and, possibly, some financial incentive, may incorporate it into her already heavy workload, but that work is fundamentally an ‘extra’. While others may resent the time she gives to it, feeling that it detracts from her paid role, the key issue is that the work is not ring-fenced in anyway. When he or she is transferred elsewhere, often at short notice, there is no official palliative care post to be filled. The replacement nurse has no duty or contract to deliver, advocate for or lead on palliative care, both within and across the hospital and community. Therefore, unless there is at the very least a plan to establish a designated, paid post, however part-time that may be, there is a considerable risk that the initial good work will not be sustained and the investment in training and mentoring will have limited success.
The role of traditional beliefs and customs needs to be acknowledged and palliative care mentors should seek to understand these. For example, patients will often not tell the pc team that they are seeking help from traditional healers.
However, culture is never static, and there is clearly a place for challenging unhelpful customs, such as those around pain relief. While it is possible to work constructively with traditional healers, the custom of avoiding conversations about death and dying will need challenging. One mentor, at a briefing by the co-ordinator of the local HBC service, was told, “you will not talk about death or dying – it is not something that is done”. Exploring the history and rationale for this will be a prerequisite for sensitively challenging the assumption that death and dying can be ignored.
In the current economic climate in both resource-poor and developed countries, the pressure to produce as much as possible with as little finance as possible is constant. Funders, governments and INGOs understandably require projects to demonstrate that they are reaching out and making a difference to large numbers of people as efficiently as possible. But while training can be delivered en masse, mentoring by its nature is an individual process with limited opportunity for scaling up. Advocating for mentorship programmes is therefore challenging in a culture that favours projects that claim, however optimistically, to be working with large populations of practitioners and patients.
As we have acknowledged above, mentoring is not an easy option. It is a skilled task that requires commitment and investment from all three parties – sponsor, host and mentor.
The feedback from the mentees that PCW and its associates have supported has been extremely consistent over a number of years and in a variety of projects. Positive outcomes in relation to validation, reflection, credibility, confidence and advocacy have been highlighted earlier in this paper. However, it needs to be reiterated that follow-up mentoring after training is not enough. It is a necessary but not sufficient component for scaling up or sustaining palliative care services in resource-poor settings. The need to address the cultural and socio-economic factors, is equally important and the goal of state-based support, embedding policy and practice in both education and health and social care institutions, remains paramount. Nevertheless, it also remains true that mentoring has much to offer, and we should not underestimate the impact of well-planned, skilled mentoring on both individuals and teams in resource-poor settings.
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Wee B and Hughes N (2007) Education in Palliative Care, Oxford University Press, Oxford
Wright M and Clark D (2006) Hospice and Palliative Care in Africa, Oxford University Press, Oxford
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